Stories of Rehabilitation
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
Explain how the metronome works.: “Well, metronome is a device, it’s computerized. You have devices on your hands, yourfeet, and there’s other devices. Basically you’re using your auditorial, your vision and your body and you’re timing it to a metronome, you’re timing it to that beat. So by training your brain to keep time it actually helps impulsivity. Since then I’ve used that on kids with ADHD and they’re not taking any medicine so you’re able to control themselves. It’s an amazing process.”
DJ talks about some of the people in his Facebook Group and how it helps them: “Or the lady that writes to me from Arkansas, Amanda, and says, “Before I met you, I never, ever got any help. Not from the school system, not from insurance companies, not from hospitals.”
Doug was at Clearview for 13 months where he received therapy 6 days a week, the goal being to transition into living on his own as much as possible, as opposed to being placed in a nursing home or group home.
Vocational rehabilitation and community re-integration ideally could work in tandem to help achieve both mental and emotional benefits. By retraining persons suffering from TBI to find different, but satisfying work, and re-integrating them into society, both the person with a disability and society would benefit. Sadly, this just doesn’t happen in far too many cases. In Doug’s early evaluations, it was determined he could not withstand full time work because of his physical limitations. Doug seems to have the ability and willingness to work. He could probably do well at a job sitting at and using a computer to communicate, yet this does not appear to be the kind of counseling done through the Department of Vocational Rehabilitation.
Even though her coma injury required her to be hospitalized for a whole month, her therapy was cut off two months after she left the hospital. In workers comp cases, the employer’s insurance company can deny care that would normally be considered reasonable and necessary.
One wonders if she has had a full work up for balance, dizziness and vertigo. She is unfamiliar with any of these terms: benign positional vertigo, BPV, BPPV or even vestibularâ€ as in vestibular disorder. Click here for a glossary of dizziness and balance terms. She clearly has not had all of the tests a neurootologist would give her. What did they do to test her balance? Whether her balance problems are the reason she had her second fall is not clear, but they certainly could contribute to it. Even an intermittent dizziness or balance problem can cause a fall, and falls are one of the biggest causes of TBI. Dizziness can also be a major source of anxiety in someone with a brain injury. Emotional stressors and pain can also bring on dizziness. Elizabeth thinks that dizziness is part of a physiological response to her symptom complex.
Fred states that most of his troubles now are his eyes. He has trouble with seeing and he sees a sight therapist to help him
Vision. Fred continues to have neurological problems with his vision. Fred states; “My vision seems most, for the most part just as normal as it’s always been, and, you know, I’m sure my vision’s a lot better than a lot of people’s, but the, it’s the concentration, but that, it’s looking at something near and looking at something far, my eyes take longer to concentrate in between things like that.” Do you have problems with peripheral vision? Fred continues; “Not anymore. That’s, they’ve, my peripherals are just the, just as good as they were, and actually I’ve noticed my peripheral vision is good. It’s not a lot better but it is better than it was. I’ve been doing the eye exercises and whatnot, and to start with my eyes were, in comparison to the way they are now, they were worse. I can’t really describe how, how they got better, but they are, they’re better than they were, and also, like I was saying about the right side of my body, I think my right eye is not as well off as my left eye. I don’t think severely, to where it’s like they’re saying there’s a problem with it, but it’s just a little slower.” He continues to get therapy and do exercises to improve his vision. Fred explains; “Right now she has me these cross, like cross-eyed things, where I use a pencil and cross my eyes and then – pencil push-ups, and then it’s either advanced pencil push-ups, where there’s a, two pictures that are the same behind, but then they have something in them that’s different, to where I do the pencil push-ups and then I try to get the two pictures to combine as one picture, into a middle picture that has the qualities of both of them.”
She was in the ICU for four days, the neuro unit for one and then the rehab unit for five days. She started keeping a journal less than a week after her injury. It is a unique stay for a severe brain injury, but not necessarily remarkable for a woman like Helena.
I asked Ians’ friend if he thought Ian would benefit from additional professional guidance? His response was; “I think so. I think when the doctors let him go it was too soon. I don’t think they fully understood what his psychological, psychology, where it was at. Because he would tell, you know, these, these things that you should be telling to the doctor, and he says I do tell them and they don’t listen. You know and I would love to have gone, been able to gone to one of the doctors and say hey, you know, when he went in, he says this and this and I would have loved to have been there and say yes, this is really happening.”
Kelly states her memories of her transfer to a Rehabilitation Hospital in Tennessee: “The physical therapist who was part of the intake assessment team was going to be part of into inter-disciplinary team, I know that now because of my second college degree. But his name was David Kelly. He was the physical therapist I said that would be easy to remember because his last name’s Kelly which is my name. And we went up and I was put into a room and just waited for all the different therapists to come and meet me, assess me for my capabilities and things of that nature.”
Once you’re done with your outpatient therapy, that would have been about the 1st of January of that year, then what happens?: “Well they told me at the end, toward the end of December that I had exceeded their training or their therapies so they were going to let me go back into the real world, and to do that, they were going to give me a graduation party, and I could invite whoever I wanted to invite.”
I was an inpatient at the hospital until summer. Sometime like June or so. And then I needed complete assistance, and I had to move back in with my parents, and I was an outpatient for a long time. And it seems like at least over a year I was an outpatient at the same hospital. Now in terms of the memory of laughing while on the balance ball, where do you think that was in that time frame?: “What I think and what I’ve been told is that it was probably when I first started therapy outside of my room. So I was in the coma, and then I had bedside therapy for a period of time. I don’t know if that was weeks, days. But then I think it was within weeks that I started having therapy, and that’s where that first memory comes.”
What do you think you need now as your daughter approaches adulthood, to bridge her from her current maturity level to where those of her own age are?: “I’d like to see more behavior rehab for her. If that was something that we were going to put her in that would be the ideal situation for me. It’s not so much the ifs, and or but on life, it’s how to behave in public, what do you do during these situations. Almost like scripting again but on a more mature level and repetition, repetition, repetition. She went from not wetting the bed, to wetting the bed for a huge period of time and then stopping. It was amazing. It seemed like things would be okay, something would happen, then they’d jump and get back on the track again. And even though you see things happen in your child’s life that are not good, you just, you can’t believe that they’re not going to happen again. It’s just a lot of tough love, love and time.”
Talk to me about the outpatient therapy.: “I had physical therapy to learn how to balance again, walk again. I had cognitive therapy, how to try and think, try and communicate, try and remember.”
Was the fifth floor a rehab floor?: “No. It is just a trauma floor is what they call it. And it was, it was terrible because she just laid there for five months after that. I mean, they tried to, they had minimal, you know, speech, occupational – I look back on it now – I didn’t realize it at the time, but I feel like they just thought she wasn’t going to do much, and they didn’t, you know – They told us that there just wasn’t money, they weren’t there to do physical therapy, that’s not what they do. We are here to make sure the person is medically safe and that’s it.” And they weren’t bringing anybody up from the rehab in to work with her?: “I would say once a week, maybe, we saw somebody. We were, my husband and I really wanted to get the trach out, so we were on them because how they do it slowly. They make it tomorrow, tomorrow, and then they cap it off, and, the speech therapist was involved in that. And she like once a week, tried to do something with her.”
Rita’s mom tells of her start of Rehab: “So at this nursing home they did give her rehab. It wasn’t three hours or anything, but it was something. Well, you know, she got on the tilt table. I don’t know if you know what that was like. The first thing that she did was get on that and
Steven states: “I never really received any direct one-on-one rehabilitation for the TBI.”
After you left Baptist sometime in August in the year of your injury, did you get any further rehab at any point?: “I was getting twice a week outpatient therapy through Baptist, and that kept going until my private insurance through the job I had fell through, because I wasn’t able to go back to work.”
Steven talks about how he got admitted to a vocational rehabilitation center: “And then after I went homeless the first time I ended up leaving Memphis and went to Tipton County. I had got involved with vocational rehabilitation in Memphis. They transferred my case to Tipton County and I got myself into a technology center and the vocational rehabilitation paid my tuition per trimester or whatever it is that we did.”
Do you think that’s something he should be getting? (Regarding therapy for his short term memory: “We just started speech therapy. Last year we did, it was called brain fitness, and it was a computer and, you know, what he did, I have no idea if it improved anything but therapy is therapy and I felt even if he’s working where you’re saying the reading and things. He had to read there, so I felt that was important. He had to go on and read a paragraph and then answer some questions at the end. So okay, it’s more than what he was doing sitting in his room where, you know, he’s really looking at the TV and nothing’s even being absorbed.”